On one of the good days between treatments, Alyssa Crane made the 45-minute drive from her apartment in Parkville, Missouri, to the Kansas City Chiefs' training camp in the summer of 2015. She had just been diagnosed with cancer a few months earlier, was 24 years old and was scared.

Crane had an aggressive form of non-Hodgkin's lymphoma and a large mass in her lung. She was told she'd probably never be able to have children.

The trip to camp was a way to escape for a moment, but what Crane really wanted was to meet Eric Berry. Just eight months earlier, the All-Pro safety had been diagnosed with Hodgkin lymphoma, and now he was back and cleared for practice.

Berry walked up a hill to meet her, and gave her a hug. He talked about some of the symptoms he had, the numbness and the nausea, and "didn't sugarcoat stuff," she said. Most of all, he made her feel comfortable.

Three and a half years later, Crane is in remission, married and expecting her first child.

Berry has torn an ACL, had his childhood home in Georgia burn down, fought cancer and ruptured an Achilles tendon (in the 2017 season opener against the New England Patriots.) The heel injury has been particularly confounding because he was listed as day-to-day from September through December this season, played two games, then was sidelined again.

Eric Berry doesn't talk about any frustrations he might have, publicly or even with his teammates. Instead, through nine hard years in the NFL, he has inspired those around him, at times without even playing a down. His influence goes beyond a team and a town, reaching into hospital wards and chemo rooms and school classrooms.

Around Christmastime, Berry donates toys and money to Children's Mercy Hospital in Kansas City. Berry doesn't want to do interviews when he visits. He just wants to see the kids. A few years ago, he spoke to a roomful of children facing possible transplants and dialysis. His hair was still gone from chemo, and, in street clothes, he almost looked like one of the young patients.

"He didn't come here with his uniform on or with an entourage with him," said Dr. Bradley Warady, the director of dialysis and transplantation at Children's Mercy. "It was just him and his mom. He was just a regular guy."

"When they can have someone like an Eric Berry, not only as a football player but as someone who [overcame] a medical challenge himself, that gives kids a boost that's hard to quantify," Warady said.

Every year, families are faced with tough decisions when it comes to their children's health.

For some, that means weeks and even months in a hospital.

Children's Mercy Hospital is preparing new episodes of Inside Pediatrics on KMBC 9.

At the premiere party Thursday night, we got a chance to meet 5-year-old Martin Callahan.

"Martin has cerebral palsy, so we see a lot of doctors," Abby Callahan said.

For Martin, moving around was a struggle until his surgery last July.

"He's having the time of his life because of what Children's Mercy did for us," Trevor Callahan said. "I won't ever be able to find the words to thank them for what they have done for my son. I couldn't imagine where we would be if we didn't have them."

Incorporating well-trained pediatric optometrists into pediatric ophthalmology practices has helped expand primary pediatric eye care services to children, often closing gaps in access to this often routine but nonetheless important service.

Children’s Hospital Colorado, Cincinnati Children’s Hospital Medical Center and Children’s Mercy Hospital in Kansas City, Missouri, are the only three medical facilities that have had pediatric optometry residency programs.

There is a definite need for primary pediatric eye care, and well-trained pediatric optometrists can provide much of the primary, non-surgical eye care that pediatric patients need.

Erin D. Stahl, MD, section chief of ophthalmology at Children’s Mercy Hospital, takes great pride in the pediatric optometry residency program there. The program was created 12 years ago due to a lack of ophthalmology residents choosing pediatric ophthalmology as their specialty and to help “provide excellent primary and tertiary care for all children with vision needs,” Stahl said.

The pediatric ophthalmology practice at Children’s Mercy Hospital currently has eight pediatric ophthalmologists and six pediatric optometrists on staff. No optometrist ever performs any type of procedure in the integrated practice, Stahl said.

"We created a great model here that we want to share,” Stahl, an OSN Pediatrics/Strabismus Board Member, said.

In the Children’s Mercy training program, ophthalmologists and optometrists work together to train one pediatric optometrist per year. The resident trains alongside the ophthalmology fellow but has a greater focus on primary care and specialty services such as contact lenses and myopia control, she said.

“We’re trying to make sure these new programs are high quality and that our members know how to best utilize these highly trained individuals,” she said.

]]>Our Experts,In The NewsTue, 15 Jan 2019 21:49:07 +0100https://content.presspage.com/uploads/1483/500_dr.stahlandpatient-343519.jpg?10000KMBZ: Coping Without a Cure, A Family Strugglehttp://news.childrensmercy.org/kmbz-coping-without-a-cure-a-family-struggle/
http://news.childrensmercy.org/kmbz-coping-without-a-cure-a-family-struggle/New technology is helping people with diabetes New technology is helping diabetes sufferers, and their parents, keep track of blood sugar and react in a timely manner, but the new devices have their drawbacks.

"The beeping on the phone, it keeps flashing, and there are days where it's beeping a hundred times a day and you think you're going to lose your mind," said Katie Harris, the mother of a 10-year-old boy with the Type I diabetes.

Type I diabetes is an autoimmune disease. The immune system attacks the pancreas and kills all of the cells that produce insulin, a hormone that allows the body to process sugar into energy.

"It's really tough to deliver that news to a family," said Dr. Ryan McDonough, a pediatric endocrinologist at Children's Mercy Hospital in Kansas City. "To essentially tell them about a chronic life-threatening disease an hour and a half ago they didn't have any idea about."

High blood sugar is not the only problem with diabetes sufferers. The consequences of low blood sugar are immediate, and can be deadly, especially at night, when a child can sleep through the highs and lows, never aware that their sugar levels are out of whack.

What is the most exciting research or innovation in your field?

▷Vaccines. There have been many vaccines that have changed the field of otolaryngology. Vaccines for influenza, Strep pneumonia, tetanus, diphtheria, pertussis, Haemophilus B influenzae, measles, mumps, rubella, chicken pox — they all have been game changers for our field. Now, we have the HPV vaccine.

Why did you choose this specialty?

▷I chose otolaryngology because of the variety there is in the field. I love treating children both medically and surgically. I like to treat the whole patient — the enlarged tonsils, the poor sleep quality, the hearing loss — to help them succeed and do their best in life.

What career would you have chosen if you weren’t a doctor?

▷I would be a teacher or a stay-at-home mom. I would volunteer in underprivileged schools. I have a passion for children in general, and I want them to succeed.

Dr. Kevin Latz, M.D. | Pediatric Orthopedics | Children’s Mercy

What is the latest innovation in your field?

▷We’re getting closer to being able to, in certain cases, repair rather than replace the ACL when it is injured. We’re also learning more about ways to avoid certain sports injuries such as ACL tears.

What is one piece of medical advice that you wish patients would follow?

▷Realize that exercise is medicine. Many diseases and conditions we treat with medications and surgery could be better treated and prevented with activity and exercise.

What is the biggest challenge currently facing medicine?

▷How to provide quality care to the most people at the lowest cost. I’d rather have the patients I care for focus on getting well rather than worry about how to pay for their care.

]]>In The News,Sportsmed,Research & InnovationThu, 10 Jan 2019 22:34:27 +0100https://content.presspage.com/uploads/1483/500_adrianelatz-954003.jpg?10000CNN: Congrats on the new baby. Would you like a DNA screening test?http://news.childrensmercy.org/cnn-congrats-on-the-new-baby-would-you-like-a-dna-screening-test/
http://news.childrensmercy.org/cnn-congrats-on-the-new-baby-would-you-like-a-dna-screening-test/By Susan Scutti

Every baby born in the United States is given a routine blood test to screen for dozens of inherited medical conditions. Now, the U.S. National Institutes of Health is exploring whether to use DNA sequencing to screen newborn babies for additional genetic abnormalities and disorders. Such DNA testing would likely complement, but not replace, the current routine blood tests.

However, before routine genetic screening of infants even approaches reality, many questions need answers, including whether genetic sequencing can accurately identify babies who will develop a disease, according to Dr. Joseph A. Bocchini Jr., chairman of the Advisory Committee on Heritable Disorders in Newborns and Children.

More clarity is also needed on issues surrounding newborn DNA testing, including consent, accessibility, data privacy and the potential changes to medical practice and costs.

Another uncertainty with genetic sequencing is that it reveals genes that don't get "expressed," meaning the protein the gene codes for doesn't get made, said Dr. John Lantos, the director of the Children's Mercy Hospital Bioethics Center in Kansas City, Missouri. "The whole process of going from gene to protein is controlled by all sorts of things we don't yet understand," said Lantos.

Lantos pointed out that the entire field of genomics is a relative newborn itself.

"Part of what we're learning is how much more complicated it is than what we thought 10 years ago," Lantos said. "It's like exploring a new continent."

This week, the Centers for Disease Control and Prevention announced that they're seeing an uptick in cases.

"We have seen an increase in the past week and it's been noticeable.” Dr. Barbara Pahud, who handles pediatric infectious diseases at Children’s Mercy Hospital, said.

This time of year can be especially bad.

"Usually, we will see a lot more flu activity because a lot more people are traveling, touching airports, touching doors, visiting families, staying in close proximity to each other and it's easier for the flu to pass among family members,” Pahud said.

The CDC reports Missouri is seeing moderate flu activity. Kansas has had a minimal number of cases.

Kansas City Health Department director Rex Archer knows first-hand how scary it is to have a serious asthma attack.

Archer has had asthma since he was a kid and decades later, he still clearly remembers his chest tightening up after his football team suffered a rare loss.

Data collected by Archer’s agency showed asthma-related pediatric emergency room visits trending up from 2006 to 2015, with children of color disproportionately affected.

From 2006 to 2009, Kansas City kids never had more than 1,653 emergency room visits due to asthma. In 2010 that number spiked to 1,988 and has stayed at 1,871 or above ever since. From 2012 through 2015, it was above 2,000 visits every year but one.

The health department doesn’t yet know why, but it has some theories.

Bridgette Jones, a doctor who specializes in treating allergies and asthma at Children’s Mercy Hospital, said the hospital emergency rooms and clinics do seem to see spikes in asthma-related visits on ozone alert days.

“I do think environmental changes are contributing to the increased rates of asthma flare-ups we see,” Jones said. “But you know, asthma is multi-factorial. I don’t think we can blame it on one thing.”

She said there may be a genetic component as well, and access to care probably plays a role. There aren’t enough asthma specialists to go around, she said, and patients who can find a specialist sometimes run into insurance-related obstacles when it comes to medications.

But to get to the bottom of it will take more study and Jones said there’s a fundamental flaw in most asthma-related research: the demographic groups most effected — African-American and Latin kids — are underrepresented in clinical trials, if they’re represented at all.

“Children die here in the Kansas City area from asthma, unfortunately,” Jones said. “So it is a really serious disease.”

Superheroes took over the Target toy section in Mission on Monday night. It was part of a $25,000 shopping spree for the patients at Children’s Mercy Hospital.

William Binderup, the owner of Elite Comics, has been collecting donations for a year to purchase all the toys.

Children’s Mercy provides a list of needs to Binderup, and he coordinates with the heroes, both costumed and not, to comb through the store.

One of the youngest shoppers was a sweet 10-year-old girl named Emma.

"I want their spirits to have that Christmas shine in their hearts. I want them to be happy," she said.

She's so laser-focused on other kids and their pain that you might not realize she's gone through her own share of sorrow. Her father, Wyandotte County Deputy Patrick Rohrer, was killed in June in a line-of-duty-death.

Rohrer was an avid comic fan and took his family to the shopping event every year.

The gifts were delivered in a rented U-haul Monday night. Parents of patients will get to pick gifts on Friday from the hospital’s Snowflake Shop.

While African American and Hispanic patients are disproportionately affected by severe asthma, these patients are poorly represented among participants in clinical trials of monoclonal antibody treatments for asthma, according to a recent study.

The results were presented at the annual meeting of the American College of Asthma, Allergy and Immunology (ACAAI) in Seattle, Washington, by study authors Susamita Kesh, MD, Children’s Mercy Kansas City, and Bridgette Jones, MD, MS, an allergist-immunologist at Children's Mercy Kansas City and associate professor of pediatrics, University of Missouri, Kansas City School of Medicine.

Many studies have shown racial or ethnic discrepancies in how asthma affects different populations. One study presented earlier this year showed that African Americans have a 2.5-fold greater chance of developing asthma.The investigators from Kansas City wanted to identify how many trials for asthma treatments include racial/ethnic data, as well as determine how well represented African American and Hispanic populations were in those studies.

“Future trials to establish asthma therapeutic efficacy/ safety for biologic agents to treat severe asthma should be conducted among better representative samples of patients with severe asthma,” wrote Kesh and Jones.

They say dogs are man's best friend, but at Children's Mercy Hospital, Hunter the service dog is everyone's best friend.

Taylia Vannicola lights up when Hunter walks her way. The golden retriever is a bright spot for the little girl diagnosed with leukemia and going through her second round of chemo treatments.

Hunter received special training in Atlanta and was specifically chosen for this position at Children's Mercy. Now, he makes the rounds five days a week, wearing a special vest and visiting as many as 10 patients a day.

He's especially tired after playing with little Taylia. Thankfully, her doctors believe her treatments are working and she'll be in remission soon. Until then, at least one more round of chemo -- with Hunter by her side.

]]>In The News,Our StoriesFri, 14 Dec 2018 22:51:58 +0100https://content.presspage.com/uploads/1483/500_therapydogs-5-947120.jpg?10000Healthline: This Is What Happens When Children Don’t Get Vaccinatedhttp://news.childrensmercy.org/healthline-this-is-what-happens-when-children-dont-get-vaccinated/
http://news.childrensmercy.org/healthline-this-is-what-happens-when-children-dont-get-vaccinated/ByBrian Krans

Diseases such as measles and chickenpox are seeing a resurgence because of an increasing number of parents who opt out of vaccinating their children, officials say.

According to the Centers for Disease Control and Prevention (CDC), the percentage of 2-year-olds who have never received a single vaccination has quadrupled since 2001, reaching 1.3 percent of children born in 2015.

While that’s still a relatively low number, it does reflect a change.

There appears to be distrust in vaccinations in a generation who may not have any firsthand knowledge of the diseases routine shots prevent. This includes the once-common chickenpox and measles.

Herd immunity — when large swaths of the population are immunized — is one of the best defenses humanity has against diseases like measles, which are easily spread through sneezing and coughing.

Dr. Christopher Harrison, director of both the infectious disease research laboratory and vaccine and treatment evaluation unit at Children’s Mercy-Kansas City, says that anti-vaccine groups promote fear of vaccines through various media, enlisting the help of celebrities and politicians.

This, he says, can put families in a conflicted position.

Parents who want to do what’s best for their children may be reluctant because they’ve heard “the non-science-based ‘information’ or opinions, and have difficulty differentiating ‘junk data’ from real scientifically based data,” he said.

“They have usually not seen the suffering and complications from vaccine-preventable diseases,” Harrison told Healthline. “They usually do know or have heard of someone who claims that vaccines were the cause of some problem that is a better known or more prevalent condition for which a defined cause is not well described, i.e. autism.”

Children who have autism aren’t an abstract concept, Harrison says, while vaccine-preventable diseases usually are abstract and distant. So, some families may decide to avoid vaccines to reduce their immediate and longer-term worries.

Officials say there’s been an increase since 2001 in the number of young children who have never received a vaccination.

They say many of these parents grew up in a world where once-common chickenpox and measles are rare.

This lack of firsthand knowledge as well as unscientific information about vaccination side effects may be fueling this trend, they say.

Pediatricians andemergency department physicians are alarmed at the growing number of children, mostly adolescents, who are taking their lives with firearms. While mass school shootings like the attack last February that killed 17 students and staff members at Marjory Stoneman Douglas High School in Parkland, Florida, generate headlines and public debate about the easy availability of firearms, suicides by gun claim far more children's lives.

Gunshot wounds annually kill nearly 1,300 children ages 17 and younger, according to a study published in July 2017 in the journal Pediatrics. Of this total, 38 percent – nearly 500 kids – died by suicide, according to the research, while 53 percent lost their lives in homicides.

Firearm injuries are now the second leading cause of death for children age 10 and older and teens (up to age 19) in the U.S. after motor vehicle fatalities, says Dr. M. Denise Dowd, a pediatric emergency physician at Children's Mercy Kansas City in Kansas City, Missouri.

"Suicides (by juveniles) are at epidemic proportions," Dowd says. "It's an emergency. If this was an infectious disease, it would be on the news constantly until we got a handle on it."

The widespread availability of firearms, the natural curiosity and impulsivity of young children and adolescents and the widespread lack of supervision of kids in homes where adults keep unsecured firearms creates "a perfect storm for tragedy," Dowd says.

]]>In The News,Child Development & Safety,Our ExpertsMon, 10 Dec 2018 20:41:27 +0100https://content.presspage.com/uploads/1483/500_gunsandkidsintheer.jpeg?10000Fox 4: From the streets to Children's Mercy, one KC artist's murals are making a differencehttp://news.childrensmercy.org/fox-4-from-the-streets-to-childrens-mercy-one-kc-artists-murals-are-making-a-difference/
http://news.childrensmercy.org/fox-4-from-the-streets-to-childrens-mercy-one-kc-artists-murals-are-making-a-difference/By Kerri Stowell

One local starving artist has found a way to turn his hobby into a career and bring smiles to sick children at the same time.

Donald Ross' story starts on the streets with his distinct murals, popular in the Crossroads Art District, a few blocks from Children's Mercy Hospital.

"I used to work for a sign company, and I was here doing some installation," he said. "Someone from facilities pointed out that I was covered in paint because I was a muralist, and he said I should look more presentable. I teased him back and said I'd like to see more murals or better murals around here."

Ross got his wish -- and a new job in Children's Mercy's maintenance department, painting the walls cream.

Fast forward 15 years, now Ross spends all his time creating cartoon characters with bold, bright colors. He hops from one Children's Mercy campus to the next, designing and redesigning areas in need of a little TLC -- including ambulances.

]]>In The NewsMon, 10 Dec 2018 17:13:41 +0100https://content.presspage.com/uploads/1483/500_scribe-2.jpg?10000National Kidney Foundation: Medical Experts Gather in Atlanta to Improve Clinical Care for Children with Chronic Kidney Diseasehttp://news.childrensmercy.org/national-kidney-foundation-medical-experts-gather-in-atlanta-to-improve-clinical-care-for-children-with-chronic-kidney-disease/
http://news.childrensmercy.org/national-kidney-foundation-medical-experts-gather-in-atlanta-to-improve-clinical-care-for-children-with-chronic-kidney-disease/Living with kidney disease as an adult is difficult, but living with kidney disease as a child, is almost unbearable, according to Sarah Finlayson, 51, who was just 21 months old when her kidneys failed.

“I was sick, and I didn’t know why,” Sarah says. “My parents never talked about it at home. I didn’t know about diet and nutrition. I was living in the dark. And, I was bullied a lot in school, especially when I was sick. It was such a different experience than being an adult kidney patient.”

Almost10,000 childrenand adolescents in the U.S. are living with end-stage renal disease (ESRD). They are30 timesmore likely to die than healthy children.

At the first ever NKF Scientific Workshop on CKD in Children on Dec. 6 and 7 in Atlanta, dozens of professionals in pediatric nephrology, patients, and their parents will gather to use recent children-focused research, the needs inherent in stories like Sarah’s, and new ideas from the meeting participants to make recommendations that will improve the care for kids with the overwhelming disease.

Dr. Bradley A. Warady, MD, Director, Division of Nephrology, Children’s Mercy Kansas City and Professor of Pediatrics University of Missouri – Kansas City School of Medicine, and Dr. Susan Furth, MD, PhD, Director, Division of Nephrology, Children’s Hospital of Philadelphia and Professor of Pediatrics and Epidemiology Perelman School of Medicine at the University of Pennsylvania, will co-chair the conference.

“Well-controlled clinical trials in children with CKD are scarce, due to the small population and their exclusion from most therapeutic studies,” Warady says. “Therefore, recommendations for clinical care in pediatric nephrology are most often based on small trials and expert opinion, with the latter commonly the product of little published evidence. The time is right to make every effort to enhance the care of children with CKD.”

"I think that was kind of shocking to us all as we were collecting this data, is that almost half of our perpetrators are minors," said Heidi Olson, the Sexual Assault Nurse Examiner (SANE) Coordinator.

The SANE program's data shows perpetrators are likely to be between 11 and 15 years-old.

"Another thing we're noticing is a lot of those sexual assaults are violent sexual assaults, so they include physical violence in addition to sexual violence," said Jennifer Hansen, a child abuse pediatrician at Children's Mercy.

Last year, Children's Mercy saw 444 kids who were sexually abused within the last five days. That number rounds out to around 1,000 a year when they include the children who report sexual assault after five days.

Victims are most likely girls around 4 to 8 years-old.

Hansen and Olson says they're noticing kids are being exposed to porn at very young ages, around 4 or 5 years-old. They say a child can develop unrealistic and dangerous ideas about intimate relationships by being exposed to violent, graphic porn.

Hansen and Olson say now that they're noticing the trend, SANE nurses have been documenting specifically if pornography is tied to a case in any way.

Their hope is that someday enough research will be collected to definitively say that pornography is influencing child sexual assault.

Although telemedicine visits have increased sharply in the U.S. in recent years, the vast majority of American adults still receive care from doctors in person rather than via remote technology, a new study suggests.

The goal of telemedicine is to help improve access to specialty care, particularly in rural, underserved areas of the country, researchers note in JAMA.

Overall, annual telemedicine visits increased from 206 visits in 2005, or less than one per 1,000 people in the study, to more than 202,000 visits in 2017, or more than seven per 1,000. Most of this increase happened over the last few years of the study, with an average annual compound growth rate of 52 percent from 2005 to 2014 and an annual average compound growth rate of 261 percent from 2015 to 2017.

“If the growth rates we are observing continue, in a decade telemedicine will be seen as quite common,” said lead study author Dr. Michael Barnett of the Harvard T. H. Chan School of Public and Brigham and Women’s Hospital in Boston.

At this point, telemedicine is still rare.

Patients seen by telemedicine are generally satisfied with their care, and telemedicine will continue to become more common as it becomes easier for clinicians to be paid for this type of exam, said Dr. Jay Portnoy of Children’s Mercy Kansas City and the University of Missouri Kansas City School of Medicine.

Standing in a line on the baseline at Koch Arena, Carli McCloud, a Wichita State sophomore majoring in exercise science, is inconspicuous next to the rest of the WSU spirit squad.

There’s no way to tell that five years ago McCloud was diagnosed with osteochondritis dissecans, a degenerative joint disorder in her left elbow. McCloud, a North Newton native, was a superb gymnast at the time and had just won the Kansas all-around state title, but doctors told her that she no longer had a future in athletics.

By the time Carli was 10, she was training 20 hours per week at Folger’s Gymnastics in Andover. When she was 13, the training increased to 24 hours per week, but Carli was also having the most success of her career. That year she won the Level 8, 13-year-old division state all-around title at the U.S. Gymnastics state meet in Wichita.

Not long after, Carli started feeling an nagging pain in her left elbow. Carli trained with the injury for three months, believing the pain would eventually subside. It never did and instead, the pain intensified.

Carli was referred to Children’s Mercy Kansas City, where orthopedic surgeon Donna Pacicca discovered Carli actually had osteochondritis dissecans and could no longer pursue gymnastics — or any athletics.

But after being told she couldn’t do something, Carli was determined to prove that she could.

]]>Sportsmed,In The NewsMon, 03 Dec 2018 22:04:37 +0100https://content.presspage.com/uploads/1483/500_carlimccloud-639513.jpg?10000The Kansas City Jewish Chronicle: Local physician recognized with prestigious ethics awardhttp://news.childrensmercy.org/the-kansas-city-jewish-chronicle-local-physician-recognized-with-prestigious-ethics-award/
http://news.childrensmercy.org/the-kansas-city-jewish-chronicle-local-physician-recognized-with-prestigious-ethics-award/Dr. John Lantos, director of the Bioethics Center at Children’s Mercy Hospital and professor of pediatrics at the University of Missouri–Kansas City School of Medicine, was honored with the William G. Bartholome Award for Ethical Excellence at the recent National Conference of the American Academy of Pediatrics (AAP) in Orlando, Florida.The Bartholome Award recognizes an individual who has significantly impacted public discussion of ethical issues in pediatric medicine.

Lantos’ research areas include bioethics, doctor–patient communication, research ethics, end-of-life care and the religious and philosophical issues in relation to healthcare.

Lantos said, “It was a tremendous honor to receive this award, especially because it was named after fellow Kansas Citian William Bartholome. Bill was a pioneer and a leader in pediatric bioethics, a mentor and an inspiration to me, and a revered member of the faculty at KUMC for many years. It is nice to think that his legacy lives on.”

In 2016, Dr. Latz received Children Mercy's Golden Glove Award, which is awarded for patient safety. He was also named to Kansas City Magazine's Top Doctors list in 2015-16.

Dr. Latz is a fellow of the American Academy of Orthopaedic Surgeons, American Academy of Pediatrics and Pediatric Orthopaedic Society of North America. He is also a member of Pediatric Research in Sports Medicine and Research in Osteochondritis Dissecans of the Knee.

'Tis the season of colorful leaves, mulled cider and — dare we say it? — pumpkin spice. Fall spans from the autumn equinox, when the sun is directly over the equator and the length of day and night are equal, to the winter solstice, when the sun is at its most northerly and the Northern Hemisphere's day is at its shortest.There's more to fall than cable-knit sweaters and harvest feasts, though. Plenty of curious questions come with the season. Read on for the most intriguing "Life's Little Mysteries" that we've gathered over years of watching the season come and go.

Why is your nose running so much?

Fall ushers in the start of flu season, but that's not the only reason the season might be hard on the airways. According to the National Institutes of Health, autumn can be a prime time for seasonal allergies. Pollen counts may fall, but mold counts in the air rise as rotting leaves and dying vegetation decompose. Dry indoor air can exacerbate sniffly symptoms by irritating the lining of the nose, according to Dr. Jay M. Portnoy, chief of allergy, asthma and immunology at Children's Mercy in Kansas City, Missouri.

Why is it so gloomy out?

Fall's moody weather may bring dark clouds, heavy with rain. But why are rain clouds so dark, anyway? The reason is that rain clouds tend to be a lot thicker than the puffy, harmless clouds that are unlikely to spawn showers. The larger the droplets of water in a cloud, the better they are at absorbing sunlight. Tiny, misty droplets in a fluffy, white cloud scatter light from across the spectrum — giving those clouds their white hue. Bigger droplets in heavier clouds also scatter light, but they do it so well that by the time the sunlight reaches the bottom of the cloud, there isn't much left for the eye to catch. As a result, the base of a thick rain cloud looks dark and ominous.

If you’ve ever come down with the flu, you know how grueling and miserable those two weeks can be. But if you’ve been lucky enough to avoid it all these years, you might be one of the many who misconstrue this contagious and potentially deadly disease as not that bad. However, there’s no denying the truth: The flu is serious stuff. In fact, every year in the U.S., millions of people get sick, hundreds of thousands are hospitalized, and tens of thousands die from flu.

“In the 2017-2018 flu season alone, almost 80,000 people died from flu and flu-related complications and about 180 of them were children — most of whom were unvaccinated,” says Kathy Neuzil, MD, director of the Center for Vaccine Development at the University of Maryland School of Medicine andNFIDBoard member.

The single best way to prevent the flu? Get a flu shot every year. Yet, despite the staggering stats above, about half of Americans choose not to get vaccinated, says the Centers for Disease Control and Prevention (CDC).

So, to set the record straight, we asked experts to unveil the biggest flu shot myths.

Myth: The flu shot can give you the flu

You’ve probably heard someone say that getting the flu shot actually gave them the flu. Impossible! “The virus used in the shot is killed so it generates immune response,” explains Mary Anne Jackson, MD, Director of the Division of Infectious Diseases at Children’s Mercy-Kansas City. While it’s true that you may get a sore arm from the vaccine, it’s not going to give you systemic symptoms like high fevers, a cough or vomiting. “If you get influenza within a day of vaccine, it’s because it takes two weeks for the immune response for those 9 years old and older, and two vaccines 28 days apart are needed in those younger, plus two weeks for response,” she adds.

Tiffany Rowe, a 46-year-old life coach in the San Francisco Bay area, still remembers how it felt as a teenager to be hoisted onstage to dance with Michael Jackson during his Bad concert tour.

She was 15 and recovering from an excruciating round of treatment for severe idiopathic aplastic anemia — basically total bone marrow failure.

"I was in front of all of those people, and I could hear the roar, and I was calm," she recalls. "I was doing what I wished to do. I felt exactly the way I needed to feel, at home and confident in my body. There had been part of me that felt pretty betrayed by my body, and I felt very at peace in my own skin again."

The moment was transformative for Rowe, who credits the experience with aiding her recovery. A study published in the journal Pediatric Research suggests her experience may not be unique.

Researchers looked back at the cases of nearly 1,000 children with serious illnesses who were treated at Nationwide Children's Hospital in Columbus, Ohio. Half the children had received wishes and the other half hadn't.

"My hypothesis is that these kids, when they come back, are more engaged with their families and medical providers, and perhaps they're more adherent to their treatment plan," says the study's lead author Dr. Anup D. Patel, section chief of neurology at Nationwide Children's Hospital and an associate professor of pediatrics at Ohio State University College of Medicine in Columbus.

To qualify for a wish, a child must have a life-threatening, but not necessarily terminal, condition, says Jamie Sandys, a spokesperson at Make-A-Wish Foundation. The foundation has more than 60 U.S.-based chapters and has granted more than 300,000 wishes since 1980.

The organization granted approximately 15,400 wishes last year, Sandys says. Still, an estimated 27,000 children are diagnosed annually with an illness that qualifies them, which concerns Sandys. "There's a huge gap that we're trying to fill," Sandys says.

The researchers found that wish recipients were 1.9 times more likely to have fewer emergency department visits and 2.5 times more likely to have fewer unplanned hospitalizations in the two years after their wish was granted, compared with matched children.

The study is observational, so it can't show that receiving a wish caused better outcomes since other factors may have affected the results. But many health care providers see change in their patients after wishes are granted.

"More positivity can sometimes be correlated with treatment adherence," says Ashley Andrews, a social worker at Children's Mercy Hospital in Kansas City, Mo.

Big Slick will more than triple the size of its annual Saturday night auction and party in 2019.

In honor of the event's 10th anniversary the June 8 auction and marquee party will be moved from the Arvest Bank Theatre at the Midland to the Sprint Center. Capacity for the event will rise from 1,500 to 5,000.

Beth Hoops told theKansas City Business Journalthat if the event sells out quickly the organization will consider adjusting the set up to sell even more tickets.

The fundraiser for Children's Mercy started 10 years ago as a poker game. It is now a full weekend hosted byRob Riggle,Paul Rudd,Jason Sudeikis,David KoechnerandEric Stonestreet. The weekend also includes a baseball game at Kauffman Stadium on June 7 and a bowling tournament at Pinstripes in Overland Park on the morning of June 8.

Last summer, 56-year-old Scott Ward discovered a lump on the right side of his neck. His primary care physician told him to give it some time. After a month, Ward got a scan. And then a biopsy. It was throat cancer.

Human papillomavirus was determined to be the primary cause.

Cancer of the middle part of the throat, like the one Ward had, is now the most common HPV-related cancer, according to the Centers for Disease Control and Prevention.

To help prevent HPV-related diseases in a broader age range, the Food and Drug Administration expanded its approval for the HPV vaccine for people ages 27 to 45 early last month.

The vaccine was previously approved for preteens and young adults between the ages of 9 and 26, and the CDC has recommended vaccination for preteens and young adults since 2007.

Missouri's HPV vaccination rate has been one of the lowest in the country. Health care professionals and advocates like Ward are sharing their experiences to combat the misperceptions and misinformation on the internet, including the myth that the vaccine causes serious side effects (it doesn't).

Meanwhile, vaccination for adolescents in Missouri, which is covered by most insurance policies, isn't happening in large numbers. In 2017, about 57 percent of 13- to 17-year-olds in Missouri had been given the first dose. Only about 40 percent of them are considered up to date.

One big reason for the low rate of complete vaccinations is a lack of awareness of the cancers HPV causes, said Sharon Humiston, a pediatrician affiliated with Children's Mercy Kansas City. Because the HPV vaccine is not yet required for enrollment in Missouri schools, parents tend to think the vaccine isn't important.

"Parents ask: 'Is this really necessary? What are my kid's chances of getting this disease, and if he gets it, is it really such a big deal?'" Humiston said.

Boys and girls need to be vaccinated before exposure because the vaccine does not clear an HPV infection that is already established, Humiston said.

Ward said he was very fortunate because the doctors caught his cancer early enough. He now tells his story to his family and friends. One of the misconceptions he has confronted is that a lot of people still don't know that males need to be vaccinated.

"If there was a vaccine, I would (get it)," he said. "I myself would hope my parents would have wanted me to get it."

Autism symptoms were significantly improved in patients taking sulforaphane, a compound found in broccoli and other plants, compared to those taking placebo, according to a preliminary analysis of a phase 2 trial presented at the Child Neurology Society annual meeting.

In a trial of 50 patients of children, age 3 to 12, six of the 20 patients (30 percent) taking sulforaphane showed improvements on the Ohio Autism Clinical Impressions Scale (OACIS) after 15 weeks. The scale includes questions about social interactions, aberrant behaviors, and other autism domains. That compared with two of 27 (7 percent) who improved on placebo (p=.048), reported Kanwaljit Singh, MD, MPH, instructor of pediatrics at the University of Massachusetts.

The researchers decided to research the compound based on reports that when children with autism had fevers, they got temporarily better — with more eye contact, better sociability, and less irritability.

They focused on sulforaphane, an isothiocyanate found in high concentrations in broccoli sprouts that activates the heat shock response, which also happens in cells during fever.

Commenting on the study, Jean-Baptiste Le Pichon, MD, PhD, associate professor of pediatrics at Children's Mercy Hospital in Kansas City, said that the open-label aspect posed problems for assessing the findings.

"There's so much of a placebo effect that to interpret any of these data is very difficult," he said.

Dr. Le Pichon said that examining sulforaphane based on the observation that children get better when they have a fever is "a reasonable thing." But he said the IL-6 findings — which Dr. Singh had said were a preliminary result and which might change on the final analysis — cast doubt on the reliability of the hypothesis.

He said the nature of the disease also makes it difficult to properly assess the findings.

"Autism is an incredibly variable disease, it's caused by a lot of different things."

]]>In The News,Our ExpertsTue, 20 Nov 2018 17:31:02 +0100https://content.presspage.com/uploads/1483/500_kidsreading.jpg?10000Kansas City Star: A Children’s Mercy nurse, a patient and a decision that led to 6 transplant surgerieshttp://news.childrensmercy.org/kansas-city-star-a-childrens-mercy-nurse-a-patient-and-a-decision-that-led-to-6-transplant-surgeries/
http://news.childrensmercy.org/kansas-city-star-a-childrens-mercy-nurse-a-patient-and-a-decision-that-led-to-6-transplant-surgeries/By Andy Marso

Christa Jordan had several reasons not to donate a kidney a few months ago.

She had just gotten married, and her husband was about to start graduate school. And her brother might need a kidney some day.

But the Children’s Mercy Hospital nurse had one very good reason to donate: a patient who also happened to be her friend needed a kidney, and she had one to give.

“I just knew it was something I had to do,” Jordan said. “It wasn’t something I questioned that much.”

Jordan’s decision triggered a series of events that led to three people getting new organs, as the University of Kansas Hospital and Children’s Mercy collaborated for the first time on a kidney donation chain.

Donation chains are still rare because of the amount of planning they take and also because they usually require at least one “altruistic donor” — a person who gives a kidney without knowing any of the recipients.

In the latest kidney chain, that was Ky Kanaman, a 25-year-old Baldwin City triathlete and businessman who, along with his wife, cares for adults with intellectual disabilities.

“I kind of looked at myself and said, ‘Well, I’ve got two and I’ve got plenty of ability to give one, I think,’” Kanaman said.

Kanaman was a match for Jordan’s friend, Dayshanae Hosman. Jordan was also a match, but not as good a match as Kanaman was. She was a better match for a person on KU’s list, Lauro Zuniga.

So Jordan agreed to give her kidney to Zuniga if Kanaman donated his kidney to Hosman. That meant that Zuniga’s mom, Carolina Perez, who wasn’t a match for her son, could give her kidney to another person on KU’s list: Matt Lewis.

“I feel like I won the lottery,” said Lewis, a 54-year-old from tiny Savonburg, in southeast Kansas.

With expertise in sports medicine, Dr. Pacicca has a special interest in knee, ankle and elbow injuries, limb lengthening and molecular biology of bone formation. Her research interests include anterior cruciate ligament reconstruction and rehabilitation as well as laboratory research of bone cell lineage.

Finding a way to incorporate normal, healthy sports and exercise with safety in children with bleeding disorders can be tricky, but it can be done.

Shannon Carpenter, MD, MS, FAAP, professor of Pediatric Hematology/Oncology at the University of Missouri-Kansas City School of Medicine, director of the Kansas City Regional Hemophilia Treatment Center, and director of the anticoagulation management program at Children's Mercy Hospital, Kansas City, Missouri, delivered a presentation titled “Bleeding disorders and physical activity: Current recommendations” at the American Academy of Pediatrics (AAP) 2018 National Conference and Exhibition that highlighted some new recommendations for children and teenagers with bleeding disorders and how pediatricians can help guide their activities.

First of all, Carpenter says some physical activity is beneficial for children with hemophilia and other bleeding disorders, but those activities should be chosen carefully to avoid doing more harm than good.

"In general, avoid contact sports—sports where you are supposed to hit someone—and those with high risk of head injury, like diving," Carpenter says. "Activity guidelines for other bleeding disorders are extrapolated from knowledge about hemophilia. Some people with milder bleeding disorders may be able to do more vigorous activity. Often, the recommendations are tailored to the individual."

Carpenter points out that children who are regularly active have been found to have fewer bleeding episodes, decreased joint damage, and improved bone density. Vigorous exercise has even been shown to help increase factor VIII levels transiently in mild and moderate hemophilia A, she says.

"The approach to the patient must be holistic. While we don’t want to forget their bleeding disorder, we also want them to be healthy individuals with good quality of life," Carpenter says. "We want to enable patients with bleeding disorders to participate in physical activity as much as is reasonable to optimize their health and quality of life."

Now a new drug just approved by the FDA promises to cut down the length and severity of the flu.

Xofluza is the first new flu treatment on the market in two decades.

“So a lot of excitement around it to have a new drug after 20 years is great news,” said Dr. Mary Anne Jackson, an Infectious Diseases Specialist at Children's Mercy.

You just take it one time, as soon as you have symptoms. It can cut down the flu's duration by a day and a half and make it less contagious.

Despite the benefits, she says there are some downsides.

“It can’t be used in children under the age of 12. It's not been studied in pregnant women or individuals with underlying health conditions that place them at increased risk for influenza complications,” Jackson said.

“It's not going to be the answer to flu. Influenza vaccine still takes front and center at this point,” she said.

When it comes to our kids, we will do anything for them. But, when they become sick, we feel absolutely helpless.

So, Children's Mercy is trying to keep parents fully involved when it comes to their kids' procedures and surgeries with an app called EASE.

For the Crusha family, this was their first time using the app as they were waiting for their daughter Sophia to get out of surgery.

On Wednesday, Sophia was having a cardiac catheterization. This is to help her in the long run and give her a normal life.

You could call it the medical version of Snapchat.

Essentially the provider in the room is able to send updates to the parents own phone and those updates disappear within approximately 60 seconds," said Stacey Gibson, a nurse practitioner in the Children's Mercy Heart Center.

But, the app doesn't just alert parents.

"I think the other thing with us there's lots of family that are praying and wanting to get updated at the same time. So, we were able to send invitations to them. So, it's like we are all here in the waiting room," said Crusha.

They are making sure parents feel they are right in the surgery room.

Right now, the hospital is just conducting a trial run, but they hope to have it in every part of the hospital soon.

Gun injuries, including many from assaults, sent 75,000 U.S. children and teens to emergency rooms over nine years at a cost of almost $3 billion, a first-of-its-kind study found.

Researchers called it the first nationally representative study on ER visits for gun injuries among U.S. kids. They found that more than one-third of the wounded children were hospitalized and 6 percent died.

The researchers found that 11 of every 100,000 children and teens treated in U.S. emergency rooms have gun-related injuries. That amounts to about 8,300 kids each year.

The study is an analysis of estimates on emergency department visits in a national database created by the U.S. government’s Agency on Healthcare Research and Quality.

The researchers focused on victims under age 18; the average age was about 15.

Almost half the gun injuries were from assaults, nearly 40 percent were unintentional and 2 percent were suicides. There were five times more ER visits for boys than for girls.

Pressure from the gun lobby has limited U.S. government funding for research on gun injuries and death, and that has led to big gaps in understanding the scope of the problem, said Dr. Denise Dowd, an ER physician at Children’s Mercy hospital in Kansas City.

“It’s really important that we have an idea of the magnitude of life lost and injured and how much money we are spending ... so we can prioritize it as a national health concern.”

But she said much more needs to be known for prevention.

“We need national surveillance systems just like we do with motor vehicle deaths, to track these injuries and figure out the circumstances,” she said.

Children in non-pediatric emergency departments (EDs) often don't get adequate pain management, a Canadian study suggests.

"This is the first study to explore pain care for children in a non-pediatric Canadian emergency room (ER) using a validated observational design," the authors wrote in their abstract. "Our results show that pain remains suboptimally managed in our ER despite training given (how to perform pain evaluations and pain care knowledge/attitude), guides of practice, and on-site available pain management protocols."

Rae Ann Kingsley, a nurse practitioner in pain management at Children's Mercy Kansas City in Missouri who was not involved in the Canadian study, told Reuters Health by email, "I applaud the authors for undertaking such a complex observational study and for utilizing the NOTPaM framework to guide the study aims. The findings reveal that improvement for pain assessment and reassessment, utilization of interventions, and therapeutically involving parents, is warranted."

"Children frequently present to non-pediatric ER settings," she noted. "Children in a non-pediatric ER have a right to receive quality pain assessment, intervention, and reassessment."

Morgin Dunleavy, director of nursing in the ED at Children's Mercy Kansas City, said by email, "These findings are not surprising based on the timeframe of the study and the population studied. Winter is a time of higher-than-average volumes for EDs. Managing the increase in ED utilization with no additional resources often leads to increased workloads and less time for nursing to use a holistic approach to care."

"This study is important," added Dunleavy, who also was not involved in the study, "because pain can have lasting negative physiologic and psychological consequences. It is also important because it demonstrates the ineffectiveness of education as a sole strategy in improving patient care."

For well over a century, Children’s Mercy has been at the forefront of children’s medicine. Not only are they renowned for helping wee-ones feel better, their history has history. To honor all the amazing things they do throughout the community, we figured there is no better outlet for our mindless “By The Numbers” query.

Year current Children’s Mercy Hospital opened: 1970. Fun fact: the campaign was chaired by former President Harry Truman and Hallmark founder Joyce C. Hall.

Percentage of donations under $100: 90%—yes, every dollar matters.

Largest donation to CM: $150 million. In January two of Kansas City’s iconic families, the Hall Family Foundation and the Sunderland Foundation joined together to kickstart the construction of the future home of the Children’s Research Institute.

Electric bill for CM in July: $480,000

How many doctors are on staff at the various CM locations: 750.

How many employees work in the CM network: 8,219 employees

Number of companion dogs on staff:2—Hunter and Hope, who provide comfort, motivation and smiles to our patients and families.

]]>In The NewsWed, 24 Oct 2018 20:43:49 +0200https://content.presspage.com/uploads/1483/500_adelehallcampus.jpg?10000Reuters Health: Children with CP may have worse pain, be less active when parents catastrophizehttp://news.childrensmercy.org/reuters-health-children-with-cp-may-have-worse-pain-be-less-active-when-parents-catastrophize/
http://news.childrensmercy.org/reuters-health-children-with-cp-may-have-worse-pain-be-less-active-when-parents-catastrophize/By Lorraine L. Janeczko

If their parents catastrophize pain, children with cerebral palsy (CP) have worse pain and more impaired activities of daily living after intrathecal baclofen (ITB) surgery to control spasticity, according to results of a study presented last month at the International Association for the Study of Pain (IASP) World Congress on Pain in Boston.

"Measuring pain in young people with communication impairments is inherently influenced by the reporter (often parents). This study suggests that parents' own fears about the pain itself may affect their ratings of pain and interference in their child," Dr. Dustin Wallace, director of behavioral health for the Rehabilitation for Amplified Pain Syndromes program at Children's Mercy Kansas City in Missouri, told Reuters Health by email.

"These findings are particularly relevant to clinicians who rely on another's report for any clinical decision making," added Dr. Wallace, who was not involved in the study. "Clinicians should keep in mind that all reporting is affected by myriad factors, both when change is observed and when change is not observed."

Parents completed the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire, the Parenting Stress Index (PSI), and a modified Brief Pain Inventory (BPI; pain interference) before and after the implant. They completed the Pain Catastrophizing Scale for Parents (PCP-P) at the first research visit.

Dr. Daniel L. Millspaugh, an anesthesiologist and the director of the Comprehensive Pain Management Program of Children's Mercy Kansas City, said by email, "The finding reinforces the critical influence of psychological and social factors in all pain experiences and the unique importance of both child and parent factors in pain and functional assessment in pediatric settings."

"I agree with the researchers that this is a unique and potentially vulnerable population wherein pain and functional assessment is inherently complex," he said. "Therefore, gaining a greater understanding of influencing factors will help clinicians interpret and act on behalf of the patient and family."

]]>Our Experts,In The NewsMon, 22 Oct 2018 16:20:02 +0200https://content.presspage.com/uploads/1483/500_holcomb-surgery02.jpg?10000Kansas City Star: Children's Mercy Home for Little Heroes Built by Summit Homes Hits the Markethttp://news.childrensmercy.org/kansas-city-star-childrens-mercy-home-for-little-heroes-built-by-summit-homes-hits-the-market/
http://news.childrensmercy.org/kansas-city-star-childrens-mercy-home-for-little-heroes-built-by-summit-homes-hits-the-market/Summit Homes, a Berkshire Hathaway affiliate, completed the first ever Children’s Mercy Home for Little Heroes in the Reserve at Ravenwood community in Olathe, KS and has listed it for $899,950.

Summit Homes built the Home for Little Heroes to support Children’s Mercy in ensuring all children have access to the very best pediatric health care, pledging to donate 100% of proceeds from the sale of the home to the local hospital.

“Our team is thrilled to unveil the very first Home for Little Heroes. We’re proud to support Children’s Mercy and their commitment to families, especially the kids of Kansas City. We can’t wait to find the family that has been searching for this home,” says Zalman Kohen, COO for Summit Homes.

The 5,437 sq. ft. home sits on an estate-sized treed lot within walking distance to the new community pool and features a contemporary Farmhouse front elevation that incorporates the latest trends in home building and design. The heavy contrast of the dark accents on a white backdrop provides a modern twist on the rustic elegance of a traditional farmhouse style with peaked gables and a large wrap-around porch. It boasts 6 bedrooms and 5 bathrooms, with a library, designer chef's kitchen, sun room with a covered patio, 2nd level loft and a finished lower level.

For more than 120 years, Children's Mercy has opened its doors to children in need. Their world-class child-centered approach and family-centered care is offered through their hospitals, research institute, student training, outpatient clinics and urgent care centers.

This project proudly to supports their mission as they care for the health and well-being of the smallest members of the community.

The arrival of October means high school football games begin to get serious.

The sense of urgency to help the family of a sick child is even stronger at Lee's Summit High School.

Their Friday night battle against neighboring rival Lee's Summit North was played as part of Siege for the Cure, an effort organized by the Tiger Football program, to help local families of life-threatening illnesses.

Step inside a waiting room at Children's Mercy, and you'll meet a blonde-haired beauty that will melt anyone's heart.

Oncologists at Children's Mercy say little Stella, who is only 22 months old, is in remission, having endured surgery to remove a baseball-sized brain tumor in July.

She's still receiving chemotherapy through a port in her chest, in addition to regular MRIs, which according to Ashley, show no sign of cancer in the toddler.

The Henrys said they never expected a streak of Tigers would swoop in to assist them. When the mother of one of Lee's Summit High's football players mentioned the Henrys, Tiger coaches named her this year's recipient of Siege the Cure.

Lee's Summit, along with Ray-Pec, Liberty and Lee's Summit North high schools, have spent the past few seasons generating support and money for families facing horrific illnesses.

On Friday, Tiger players wore special pink jerseys that showed the names of 115 local people with various forms of cancer, including one for Miss Stella.

Brooklynn Dodge might have been the most excited 7-year-old to walk into El Paso Elementary School on the first day of classes this fall.

That she’d ever be 7 or get to go to school were never guaranteed for this bright-eyed, wide-smiled girl who struggles to think of something specific when asked what makes her happy.

The secret to her attitude?

Not taking anything for granted. A lot of people try to live by that motto.

Brooklynn is just glad to live.

A newborn’s heart is the size of a walnut. Only half of Brooklynn’s has worked since she was born.

“She has half a heart. She doesn’t have 100 percent lung function. She’s missing a large part of her neurological anatomy. And she’s rockin’ it,” said her mother, Melissa Dodge.By the time Brooklynn joined Erin Lewis’ first-grade classroom Aug. 15, she’d undergone 21 surgeries, three of which were open-heart procedures – the first when she was only 8 days old. She spent seven months of the first year of her life in hospitals. She has overcome a paralyzed diaphragm and is still living with a paralyzed vocal cord. She sleeps on oxygen because doctors diagnosed her in 2016 with chronic lung disease.

Dodge found out when she was 18 weeks pregnant that Brooklynn was the one in an oft-cited statistic. One out of every 100 babies born in the U.S. come into the world with a congenital heart defect.

Brooklynn has hypoplastic left heart syndrome, which, according to the U.S. Centers for Disease Control and Prevention, affects normal blood flow through the heart. The left side of Brooklynn’s heart did not form correctly.

Since birth – and even before, really – doctors and surgeons at Children’s Mercy Hospital in the Kansas City area have worked to keep Brooklynn alive. Dodge said staff at the hospital are like family.

Brooklynn’s teacher, Lewis, said Brooklynn “reminds me that even on my worst day, I have nothing to complain about.”

Despite being in a constant state of heart failure, Dodge said her daughter “is so thankful for life. She never has a bad day. Her joy ... is massively contagious.”

North Andrew senior Logan Hughes has been a part of a state championship team during his high school career, but he almost never made it to high school.

Logan and his sister, Shayne, were in a four-wheeler accident when Logan was just four-years-old.

"My nephew called me and said there was a bad accident and I didn't even take time to even say where was," Logan's mother Lisa Hughes said.

The family quickly rushed to Logan's aid, as he was trapped between a barb wire fence and the four-wheeler.

Logan's leg had barb wire wrapped around his leg—cutting his leg to the bone.

Logan had three different surgeries over the course of three days. He spent 10 days in Children's Mercy Hospital.

"He didn't have any feeling in his leg for a long time—couldn't control anything from his ankle down and had to wear a brace," Gary Hughes said.

Hughes went through several treatments of physical therapy and over time, he gradually gained control of his leg again.

Logan has enjoyed his success in sports, but it's been more than that for the Hughes family.

It's a miracle," Gary said. "I'm going to give credit where it's due. God saved his life. He didn't save him just for football. I want him to play hard and he does. I want him to run hard and he does, but those are just life lessons that he is learning because there's something bigger."

According to the hospital's child safety and injury prevention center, there are about 3,500 sleep-related deaths among babies every year in the United States.

Police say too often parents who don't have a separate sleep area for their babies end up falling asleep with them in the same bed, and that can result in tragedy.

"A lot of the concerns we have with that is parents rolling over onto the child during sleep or the child slipping between couch cushions and becomes entrapped in cushions," said Brad Winfrey, manager of the hospital's childhood safety center. "So keeping a child in their own sleep area is the safest place for a child to sleep from birth to one year old."

When Beth Cook’s then 8-year-old son Travis was diagnosed with a brain tumor, she did not know what to say.

“I did not know what to tell Travis, but I had to tell him,” recalls Beth. “I told him there was something in his head that didn't belong there, but it was going to be ok because he had the best doctors in the world taking care of him. I didn't know if that was the right thing to say, but it comforted him. I was a lot less confident than I showed.”

The story is similar for most childhood cancer families—the diagnosis is a shock and parents are left struggling with the right words to tell their child and then later their siblings, friends and classmates.

The hardest step is saying cancer for the first time.

For both children who are diagnosed and the children closest to them, using medically correct terms is important, according to Amanda Woelk, a Child Life Specialist at Children’s Mercy Hospital in Kansas City.

“We encourage the use of the correct terminology. If you use another term in an effort to make your child less scared, it can backfire,” said Woelk. “It is scary if kids overhear you use the word cancer, if you haven’t used it with them before.”

It is extremely difficult for both parents and children to explain to other people how a childhood cancer diagnosis has affected them. This is normal, says Woelk. But, making connections with other families dealing with similar diagnoses can help with feelings of isolation and loneliness.

For friends and families of childhood cancer heroes, Woelk reminds everyone not to shy away or be worried that you don’t know the right thing to say. The time during diagnosis and treatment is when your loved ones need you the most. You can also reach out to professionals for advice on how to communicate and provide support.

When it comes to cancer research, pediatric cancers are getting a very small portion of the funding to find treatments. Cancer remains the biggest disease-related killer in children.

However, the American Cancer Society and at least one local organization are trying to change that.

Deliece Hofen`s son, Braden, was diagnosed with neuroblastoma when he was just 3 years old. After more than a year of treatment, Braden`s cancer relapsed, and his odds for survival were just 10 percent.

Braden survived, but his mom was shocked to see so few treatment options for her young son.

She realized she had to come up with a way to fund more research for childhood cancer, so she started Braden`s Hope.

Braden`s Hope pledged to give $3 million over three years to researchers in Kansas City, and this year`s recipient of a $1 million grant is Dr. John Perry of Children's Mercy. Dr. Perry is a survivor of pediatric cancer, it`s what influenced his decision to research pediatric cancers.

"Originally, I was working on how normal stem cells make more of themselves. I realized in doing that - that that process can be hijacked by different genetic alterations, and you can form what`s known as a leukemia stem cell, and that is really the root of the cancer. So if you can target that, then you can potentially eliminate the cancer," he explained.

Dr. Perry hopes this treatment will not only help cancer patients, but it`ll reduce the after effects that other treatments may cause.

]]>Cancer,Research & Innovation,Our Experts,In The NewsTue, 02 Oct 2018 19:24:36 +0200https://content.presspage.com/uploads/1483/500_bradenhofen.jpg?10000The North American Pediatric Renal Trials and Collaborative Studies and Horizon Pharma Announce New Long-Term Cystinosis Registryhttp://news.childrensmercy.org/the-north-american-pediatric-renal-trials-and-collaborative-studies-and-horizon-pharma-announce-new-long-term-cystinosis-registry/
http://news.childrensmercy.org/the-north-american-pediatric-renal-trials-and-collaborative-studies-and-horizon-pharma-announce-new-long-term-cystinosis-registry/A prospective longitudinal natural history registry designed to provide long-term data evaluating people living with cystinosis was launched today at a meeting of The North American Pediatric Renal Trials and Collaborative Studies (NAPRTCS) in Chicago, Ill. The registry will collect and organize physician-reported data that will help healthcare professionals better understand the natural history of cystinosis. Data collected will also be available to researchers exploring new potential treatments for cystinosis. Utilizing the established NAPRTCS infrastructure which collects data on patients with chronic kidney disease, on dialysis and following kidney transplant, the cystinosis registry was made possible through a partnership between NAPRTCS, leading physicians in the cystinosis community, and the medical leadership at Horizon Pharma plc (Nasdaq: HZNP).

“The registry will also help us answer a number of questions related to the long-term outcomes for patients and the long-term effects of cystinosis on the kidneys and all other organ systems.”

“Initial cystinosis natural history studies were conducted decades ago by the National Institutes of Health and there have been few studies since that time that track the progression of cystinosis,” said Bradley Warady, M.D., professor of pediatrics at the University of Missouri-Kansas City School of Medicine, director of pediatric nephrology at Children’s Mercy Kansas City and member of the NAPRTCS board of directors. “With recent advancements, people with cystinosis are living longer lives; however, our understanding of the disease in the context of these recent advancements and new treatments is limited. By gathering data from people living with cystinosis over an extended period of time, the NAPRTCS registry will provide key information for physicians and researchers.”

Just looking at 5-year-old Ainsley Bridges from Westwood, one would never suspect she has any health complications. The friendly 5-year-old enjoys gymnastics, ballet and swimming.

Yet Ainsley lives with phenylketonuria, or PKU, a rare, genetic and lifelong disorder that causes brain damage if left untreated.

RareKC, a group that works to supports people diagnosed with rare diseases, says its inaugural "Reach for Rare" fundraiser will help raise awareness of the challenges faced by the Bridges and other metro families coping with a rare disease diagnosis.

Rare diseases and disorders come in all forms and manifest in different ways. For example, Ainsley must follow a strict diet that limits her intake of phenylalanine, an amino acid mostly found in protein. PKU is caused by a defect in the gene that helps create the enzyme needed to break down phenylalanine.

Mindy Bridges said she hopes Kansas City will become a center for treating rare diseases, citing new research facilities at Children’s Mercy Hospital.

“It just gives me hope that it will benefit not only my child and my family, selfishly, but the community,” she said.